What If I Visit and They Don’t Know Who I Am?

Care partners regularly ask me about one of their deepest fears.

The fear usually goes like this: at some point, you’ll walk in to visit your loved one, and that person will look at you with a blank stare. “Who are you?” they’ll ask you, as your own eyes fill with tears.

Here’s the good news: this fear is mostly nonsense; a myth perpetuated throughout modern society through movies and TV shows. I blame 2004′s “The Notebook” for about half of it. Spoiler alert: if you haven’t seen The Notebook (it came out in 2004, so if you haven’t seen it yet, I doubt you will) — one of the main characters has dementia and her husband comes to read to her every day. She seemingly has no idea who he is, until, suddenly, she remembers everything about him and their past together. Then, just as suddenly, it’s all gone and she’s screaming, crying, “Who are you?! Help me, help me! Who is this man!”

Frankly, it’s nonsense. That’s not how dementia works.

Yes, people do have more “lucid” moments sometimes, especially when a person has something like Dementia with Lewy Bodies or Parkinson’s disease dementia, but COMPLETE clarity to ZERO clarity doesn’t exist. (If you’re still doubting me, watch that movie and let me know your thoughts…it’s totally Hollywood!)

If your loved one doesn’t seem to “know who you are,” it’s not because they don’t love you. It’s not because they don’t know you. It’s not because they don’t recognize you as an important person. It’s because they can’t figure out how you fit onto their timeline.

As an example, if you are 65 years old and your father remembers you being only 35, he’s going to wonder who this lovely 65-year-old woman is when you walk through the door. 

“Wow!” he thinks. “I know I like this person, I know she looks familiar…but from where?”

In his mind, you’re 35, not 65. He may call you his wife, his sister, or another female relative or friend. This makes sense, right?

I call this idea Timeline Confusion(TM).

In this situation, we don’t want to spend time saying things like, “Dad! Don’t you remember? I’m your daughter!”

Instead, it’s best to go along with where his timeline is. If he thinks you are your mother, that’s okay. If he suddenly begins touching your thigh, it’s okay to move away and come up with an excuse, but if he just wants to spend time with you, don’t exert effort trying to force him onto your timeline.

If the person living with dementia is your grandparent, there may be a very good chance that, in their mind, you don’t even exist yet! If they think of themselves as being your age, how the heck would they have grandkids? 

I’ve met a LOT of people living with dementia. I’ve only seen this Timeline Confusion happen a handful of times: most of the time, people recognize their loved ones on their timeline throughout the entire course of the disease. 

If Timeline Confusion DOES happen to your loved one, it will happen slowly. If something changes suddenly, it’s because there’s a medical problem: they may have a Urinary Tract Infection or suffered a small stroke. Change like this doesn’t occur overnight. 

When you’re seeing a loved one after not seeing them for a bit, introduce yourself slowly. You might walk into the room and say, “Hi! How are you today?” and see what their reaction is. Allow them to identify you. If they struggle, don’t say, “I’m your daughter, Rachael!” but say, “I’m Rachael.” Allow them to tell you who “Rachael” is to them.

For more on all this good stuff, check out my eKit on Embracing Their Reality(TM).